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<icnmgrjill>Greetings
everyone and welcome to the ICN Support Chat for May 16, 2000. I'm going to
place the chat room under moderation. What this means is that only the guest
speaker and myself will be able to talk publicly. You can still whisper amongst
yourselves and we hope that you will whisper your questions to me so that
we can take Q&A from the floor tonight.

<icnmgrjill>The necessary
disclaimer: Active IC patients understand implicitly that no information gained
on-line can or should be considered personal medical advice. Only your personal
physician can and should give medical recommendations to you. We encourage you
to review any information that you gain via the web (in this chat, in our message
boards & web site) with your care provider. You can use the ICN research library
to pull the latest research abstracts and articles on pain management. These
may be helpful both to you and your care provider as you explore new treatment
options. http://www.ic-network.com/library/

<icnmgrjill>It
is my pleasure to introduce Dr. Alan Kwon. He is the Director of Ambulatory
& Pain Services for the Vanguard Corporation of America. Dr. Kwon is an anesthesiologist
who has run a variety of pain management programs throughout the country.
When he practiced here in Northern California, IC patients found him compassionate
and effective. He currently sees patients in Philadelphia & Southern New Jersey.
During his presentation to our local support group (IC-Redwood Empire) back
in 1996 on pain management, he introduced me to the concept of a pain management
"tool kit." We expanded that idea to an "IC
Tool Kit" which is the guiding principle of the ICN web site. Welcome
Dr. Kwon. It is a pleasure to speak with you again!

<drkwon>Thank
you very much Jill for welcoming me and inviting me onto this chat. I'm ready
to get started and people can go ahead and ask questions to Jill and we'll try
to get to as many as we can.

-------------------------
Q&A Begins ----------------------------

<icnmgrjill>Great.
Let's start out with the most important question of all. Is IC and bladder pain
real? Or are we just imagining it?

<drkwon>The
answer to that is YES! IC pain is real. It is an identifiable problem and it
is a treatable problem.

<icnmgrjill>How
is the pain of IC different to other more common types of pain?

<drkwon>Well
let me first say a little bit about bladder pain instead of, say, pain from
an injured finger. Internal organs, such as the bladder, liver, the GI tract
respond to different mechanisms of injury and have different qualities of pain
associated with them rather than injuries to our limbs.

The pain of the bladder
is usually associated with distention,
filling or stretching. Most of us are familiar with the dull ache of having
to go to the bathroom or if we had a GI illness or lots of gas pain. Those are
pains from the distention of what is called a hollow "viscus." It tends to be
diffuse and may have several different qualities about it. Generally, under
normal circumstances, it's relieved by reducing the pressure. So, by passing
the gas, or belching, your stomach feels better. Under normal circumstances,
emptying the bladder should make you feel better.

In IC, there appears to
be some problem with the pain mechanism that causes it to fire with smaller
distentions and even to maintain some baseline discomfort or pain when the bladder
is not distended or filled.

The one interesting aspect
of pain is that there will be general qualities of pain that are similar amongst
most people but then each individual may interpret finer aspects of pain differently.
So, a burning pain may feel like a stabbing pain to someone else The most common
pain that I've encountered with IC is a constant, low grade burning ache just
above the pubic bone interspersed with periods of sharp, stabbing, intense discomfort.

<icnmgrjill>Some
people describe IC pain as "intractable" pain. In other words, one of its qualities
is that it's very hard to ignore. It's not like having a cut where, two hours
later, the pain sensation dwindles. For some IC patients, it seems that pain
just goes on and on and on until they find a treatment that helps them. Do you
agree that some patients experience intractable pain with their IC?

<drkwon>Yes,
I agree and that leads some people to believe that there are subsets of IC patients.
Some may be predisposed to more chronic pain while others may have more intermittent
flares and remissions.

<icnmgrjill>How
should pain be treated?

<drkwon>The
first step in treating pain is, for the patient to recognize that they have
pain. I know that sounds odd but many people deny their pain or they are too
embarrassed to talk about it. So, for whatever reason, the patient must be able
to identify and accept that they have pain, that it's okay to have pain and
that it's important enough to their lives to seek care. So, the first step,
is that the patient must first recognize that they have something and then seek
attention for it and to begin a pathway towards treatment.

The second step
is to begin to make alliances with friends, family and physicians to assist
you along your pathway towards improvement or stabilization.

<icnmgrjill>What
if your family doesn't believe that you are in pain?

<drkwon>I
would say "Well.. does my family tell me when I'm hungry?" Or "Do they tell
me when I have problems seeing?" This might be a bit sarcastic but, if you have
a problem and people tell you that you don't and you've made a self-analysis
and said that this is REAL.. then they are wrong. WE hope that they will begin
to recognize it.

<icnmgrjill>So..
essentially, what you're saying is to have a team approach. It's pretty hard
to seek care without support from others.

<drkwon>In
more general terms, if you're playing basketball and had people who didn't want
to be on your team. You wouldn't keep asking. You would just look for others
(other friends, other family members, other physicians) to take their place.
The patient is the team leader and everyone else are the supporting players
though I realize that sometimes it may not feel that way.

<icnmgrjill>How
should we look for doctors who treat pain? Any suggestions?

<drkwon>The
best route is through referrals such as the network here or through other organizations
or friends or associates who have other painful conditions that might not be
IC but can point them in the direction of a clinic, physician or other health
care member that will do the most important thing.. which is listen.

<icnmgrjill>Once
you've found a doctor (and we'll talk more about that later) can you share with
us your strategy on treating a patient in chronic pain?

<drkwon>Well,
Jill, you had the opportunity of being with me in California for our original
presentation regarding the tool kit and the idea of developing a tool kit still
works. It's a very good plan of action. Let's break things down into smaller
components.

(1) Separate your real
life from your pain. You are not your pain. It does not change the essence of
YOU or make you a bad person.

(2) Long term strategies.
Begin to look at your life and make a list of the things that you still wish
to accomplish or do. Then, on a daily basis, ask yourself, what is it that I
can do to make sure that I stay on track or on my path.

(3) On the short term,
what do I need to do this hour to take care of myself so that I build my hour
into a day.. and I build my day into a month.. and a month into my life.

<icnmgrjill>What
are some examples of long term pain management strategies?

<drkwon>In
relation to IC, long-term strategies are built around how each individual is
effected. As we said earlier about people with constant discomfort versus those
who have periods of remission so the long-term strategies of the two groups
will be different.

<icnmgrjill>Basically,
our goal at the ICN has been to help patients focus on their daily lives..
what can they do a little each day that will help them improve their health
and their pain. And it's not just about medication. It's about taking responsibility
to learn all about pain management options. It can be as simple as practicing
yoga or just changing your diet. Or it can involve a more time intensive treatment.

<drkwon>I
looked at your web site and I feel that it's very well structured.. the basic
tools and a sample tool kit. It's an excellent way than what I'm probably providing
at this moment so I encourage you to review those materials.

<icnmgrjill>Usually,
a physician will first prescribe an antidepressant as a useful way of control
pain over the long term. But, the side effects can be burdensome. Any comments?

<drkwon>Antidepressants
have one great property about them and should be one of the first line treatments
in that it can help control a lot of the anxiety that occurs with any painful
condition.

<icnmgrjill>Any
difference between tricyclics and others? Have you found one type of antidepressant
to be more helpful than others?

<drkwon>No.
What I've found is that it may require trials of multiple different types of
antidepressants or classes of antidepressants to find a combination that works
for you. Just because one or two are tried and they seem not to work.. doesn't
mean that you should give up. There are hundreds of antidepressants available.
So it may take a little time to go through various trials to find that which
works for you. Most physicians will stop after trying Elavil or wellbutrin but
they should continue with others, such as Prozac, etc.

<icnmgrjill>Once
antidepressants are used some patients continue to experience pain, particularly
intense pain requiring an opiate (Vicodin, etc.). But, some physicians are worried
about addiction. Can you share with us your insight on the concept of addiction
versus tolerance?

<drkwon>Let
me take tolerance
first. Tolerance is usually accepted that a dosage of medication that used to
be effective is no longer effective at the prior dosage level. That medication
will continue to be effective if you can increase the dosage.

Addiction
can be to a number of different medications other than narcotics. The best example
is cocaine, which we tend to forget is a medication in which people seek out
the drug for reasons other than specific syndrome or pain usually because of
the side effects. Research suggests that chronic pain patients are less likely
to exhibit addictive behavior when they are treated appropriately.

The subtle difference that
I'm trying to make is the patient who is addicted versus the fearful patient
who symptom magnifies because they are afraid of not getting their medication.
Sometimes it's difficult for physicians to differentiate between the two.

<icnmgrjill>We
focus on the concept of catching pain early. The earlier you catch a flare and
the earlier you control the pain, the easier it is to interrupt the cycle and
the less medication that it takes to control. Do you agree?

<drkwon>I
agree wholeheartedly. It's important for patients to understand how to use pain
medications appropriately. In some circumstances, a physician may structure
a program of a long acting opiate with a short acting opiate. For example, a
fentanyl patch is a classic long acting opiate or long acting delivery system.
But, for breakthrough pain, a patient may also be given Morphine Sulfate which
has a fast onset that can blunt rapid build up of very aggressive pain.

I think one of the most
effective books on pain medications is The
Pain Control Workbook. But if people can borrow a pharmacology text book
called "Goodman
and Gilman". I think that would be a great resource. It's a little technical
but you'll get a real in-depth review of what narcotics actually are, how they
are derived and where they act. It will also help them understand why they don't
work sometimes and why they produce the side effects that they do and why physicians
are sometimes worried about the addictive nature of medications. It is, again,
a little technical, but a little persistence will help you through it.

There's also a handbook
called "The
Nursing Drug Handbook" that will list many of the pain medication uses.
It's a comprehensive pocket brain that is easy to understand and a good resource
for you.

<icnmgrjill>Any
comments on neurontin (gabapentin)?

<drkwon>Neurontin
is a very interesting medication. It's showing promise in a number of conditions
and works on another portion of the neural transmitters for pain and the feedback
that controls pain. I, personally, have seen few side effects associated with
neurontin and I have not found neurontin to be addictive. But it DOES require
the physician to read about the medication, how to start and withdraw a patient
from it.

Another medication, Clonidine,
has appeared effective. It is a blood pressure medicine. I use it with patients
who have RSD (Reflex Sympathetic Dystrophy) and it has been effective in some
patients with IC.

<icnmgrjill>Let's
take some Q&A from the floor. Mac says.. I've had IC for 32 years. Is there
any chance that pain medication will still help after so much bladder damage
has occurred.

<drkwon>The
answer is yes. Tissue damage or damage to the bladder does not limit the effectiveness
of various medications to control pain. You just have to be assertive and try
options until you find a combination that works for you.

<icnmgrjill>Teatea
asks about the role of heat in treating IC. Do you feel that heat, or using
a hot tub/jacuzzi, are helpful?

<drkwon>I
think that it works through relaxation and relaxation has been shown to be helpful
in treating all types of pain, including IC.

<icnmgrjill>One
patient here says that she had her bladder removed more than ten years ago yet
still experiences pain. But she's not sure where the pain is coming from.. whether
its adhesions or nerve damage.

<drkwon>I
think what she's shared with us is a good example of how tissue damage or even
removal is not always associated with pain.. or with the loss of pain. That
pain is carried in the nerve fibers and we know that information can be imprinted
into the spinal cord or higher centers and continue to produce sensations, both
pain or pleasure, long after the offending stimulus has stopped.

<icnmgrjill>Yes,
I remember you giving a great example about this. Many years ago bladder removal
was considered viable for reducing pain but we've learned since then that patients
may still experience pain even after removal.

<drkwon>The
most important part here is that while the removal of the bladder be necessary
with some medical conditions but it may not relieve the pain. Mechanical dysfunction
and pain are two different entities.

<icnmgrjill>Lesa
asks "what's a good way to describe pain so that your physician understands
it better.. and takes it seriously?"

<drkwon>Well,
the worst thing a patient can do is to present with what we call symptom magnification.
They have symptoms but they've blown them up because they are afraid that they
won't get attention or proper therapy. Most physicians will initially believe
patients when they present with pain and explain their symptoms. Most physicians
understand that pain hurts. The best approach is to just be straightforward,
honest and unabashed.

<icnmgrjill>So,
would you recommend that patients bring a pain diary to their first visit?

<drkwon>No,
your job is to establish a relationship with the physician first. A pain diary
may be presented later or mentioned during the initial conversation that you've
kept notes. But a diary can be very threatening to physicians on the first visit.

In describing your pain,
try to use descriptors well. Use terms like sharp, shooting, burning, the location,
and the frequency. Try to be as specific as possible. When it happens, how it
happens, what's be done for it in the past.. if anything. That's the best approach.

Sometimes IC can be so disturbing
that it's overwhelming to both the patient and a new physician. So, take a deep
breath and focus on developing a relationship with your doctor first.

<icnmgrjill>Russ
wants to know what your opinion of intrathecal infusion pumps and is there a
benefit?

<drkwon>They
do work but my personal preference is not to do it too soon or too early, particularly
in young patients.

<icnmgrjill>Sue
has a great question. She asks "What do you do when you get tired of taking
medication, after a year or so?"

<drkwon>Remember
that pain management is not just about taking medication. It's about using other
strategies, such as perhaps a TENS unit, relaxation, acupuncture, etc. So, the
more important question is "what would you do if you stopped your medication?"
And how would you feel? Obviously if you feel better stopping it, then you need
to stop it. Being tired of doing something is often an indicator of being tired
of something else so take some time to think about that.

<icnmgrjill>Dollmaker
wants to know what the usual dosage for Elavil is?

<drkwon>For
painful conditions, Elavil is used from 25 to 75 mgs. When you enter the 100mg
and above range, that's the antidepressant range. My best approach for pain
is that all medications should be titrated starting at the lowest dosage possible.

I think it's important,
for pain in general, that people know that many of the drugs that we use are
not FDA approved for the method or manner in which pain physicians will use
them. So, using the standard table found in the PDR or other references is not
always appropriate. The FDA recognizes that drugs are used in "off label" fashion
and they understand that the physician maintains a motto of "first do no harm."

<icnmgrjill>Cricket
makes an excellent point. That some patients only try one medication at a time
and that, for her, it wasn't until she tried a combination of medications that
it started to help.

<drkwon>Fantastic.
Cricket has an excellent toolkit.

<icnmgrjill>What
should a patient do if a doctor just doesn't believe that they are in pain nor
require anything other than aspirin, which many ICers have faced?

<drkwon>Find
another physician BUT maintain your relationship with the first one, if possible
so that you don't burn bridges. Consider sending them some educational materials
on IC. I'm sure that the ICN and the ICA have some excellent medical journal
references that you can share with your doc to justify your disease and pain
level.

<icnmgrjill>Several
people in the room are asking about the use of Methadone.

<drkwon>It's
a good drug when used appropriately. It's one of the longest acting opioids
and may have less addictive properties than the rapid acting opioids such as
MSIR. However, it carries more stigma with it. For IC patients, I've used it
in small dosages effectively and, generally, as a long-term strategy!

<icnmgrjill>Thank
you Dr. Kwon. We've taken a lot of your time tonight.

<drkwon>I
want to thank everyone for coming tonight and the ICN. You have a wonderful
web site and I encourage all of you to refer the site onto their friends, family
and physicians and even to people without IC because it is a wonderful source
of information.

Please review the ICN Disclaimer:
Active and informed IC patients understand implicitly that no patient, or web
site or presentation on a web site should be considered medical advice in all
cases, we strongly encourage you to discuss your medical care and treatments with
a trusted medical care provider. A copy of our more extensive disclaimer can be
found at: www.ic-network.com/disclaimer.html